When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the stare of another child. It could be a phone call from a doctor with lab test results that needed addressing. It could be someone at work complaining about their healthy kid throwing a fit at Target and wishing with all your might that Grace would throw a fit at Target. It could be dropping all the plans you’d made for something fun because Grace was hospitalized.

Looking back we were struggling against not being in control and feelings of helplessness. There were people in our life at that time (some of them are still around) who helped us in big and in small ways. Sometimes honestly all it took to feel better was for someone to say something kind. For someone to want to hold Grace. For someone to offer an idea we could run with, a different perspective on Grace’s abilities, or even just to convey they thought Kevin and I were doing right by Grace.

At some point in her second year, we came up with the idea of the scarf to try and explain our experience as special needs parents.

Here’s how we explained it to ourselves. Being a special needs parent is like being outside in winter on an especially cold and windy day. You aren’t there unprotected from the cold. You have boots, a warm coat, gloves, and a hat…you did what you needed to do to go outside. But somehow as you are out there walking, thinking you are all bundled up, cold air gets in under your coat and you are beyond freezing. A scarf would have prevented that cold air from sneaking in.

In our lives, we have to depend on other people to play the role of the scarf for us. To think that we can do it all just the two of us is too much.

So we played with the idea for a few years, it just kept coming back up. Then at some point we decided that sometimes it would be good to give an actual scarf to the people who are our metaphorical scarves. We made a card with an explanation. On the back of the card we make it all official using the tagline “a pink helmet production”. There’s a picture of Grace and Hoover that appears above the tagline. We take a picture of Grace wearing the scarf to put in the card. We tie the scarf with pink ribbon. And then we get it to the person. We don’t have strict criteria for receipt. And honestly, there are people who deserve one that we haven’t given one to.

I’m working on four scarf cards tonight. Four women who have been a scarf for us and should know how grateful we are for the role they have played in Grace and our lives. They all brought warmth in different ways. Our story isn’t the same without them. In a lot of ways a scarf is a small token of appreciation but hopefully, it is something that will impress upon them our gratitude.

It’s amazing to me that a metaphor we came up with when Grace was two hangs on today now that she’s 12. I also don’t believe we’ll ever outgrow it. What was true then remains true now. We are vulnerable simply because Grace is Grace and we will always need people to come alongside us in big and small ways so Grace can be Grace.

Last week at this time Kevin, Grace, Graham, and I were just home from a family camp that serves special needs families. As part of the programming, the mom’s were all pulled together for some focused time. In that time there was a comment made about the club of special needs motherhood. Some of the women in that group joined voluntarily by adopting a child or children with special needs – others like me never anticipated being in the club; we were voluntold.

I’ve thought a lot about the club over the last week. I didn’t find it right away when Grace was diagnosed. I caught glimpses of it when Grace was hospitalized on the epilepsy unit and we’d meet people and talk about epilepsy and seizures in this really frank way. When Grace was little I felt much more held together by the professionals who assisted her through early access then I did by any kind of special needs community. I think the intimacy of those professionals being in your home is part of that.

I’ve since discovered that when I wasn’t looking the club seems to have formed around me. This is heartbreaking and such a relief.

I grieve a little when a new mom joins the club. It’s not like there is a membership card – but a new diagnosis that grants you entry. This is a not an easy journey. And even with the club, it can be lonely.

What I’ve learned from being in the club is that there is a lot of ability in disability. Ability looks different in different people – there is no standard. Even though I knew some disabilities were invisible I didn’t think about it much. I do now. I’ve learned to never compare – the same thing in two kids can look very different. I’ve learned to reserve my judgment – you just never know what someone else is dealing with. I’ve learned the power of empathy. I’m reminded of the importance of laughter. I’ve learned how to live in a continuous cycle of grief. I’ve learned that to encourage sometimes all you have to do is smile. Sometimes you send a text. Sometimes you bring a meal. Sometimes you just listen to someone explain why they are angry – and you don’t tell them they shouldn’t be. I’ve learned that you don’t have to agree with someone on everything to be a support – it’s not an everything or nothing kind of thing. I’ve been reminded of the importance of celebrating what should be celebrated and not glossing over it because it doesn’t seem big enough to celebrate. I’ve learned what it means to wait. I’ve learned that what you say and how you say it really does count. I’ve learned what it means to be vulnerable. I’ve learned about optimism even when it seems crazy to be optimistic.

I’ve learned that you need both. You need people outside and inside the “club” in life if at all possible. In some ways, it’s harder to add the people outside the club to your life because you are in the club to begin with.

And to sum it up I’d say the hardest part of being in the club is that there is a certain amount of uncertainty you just have to be ok with. If you aren’t its hard to enjoy the good stuff.

I’m grateful the club found me. I can’t imagine doing it alone. Sharing life is such an important part of living it.